May 4, 2021 at 6:49 pm #28217
Hello friends –
I had a routine hospital appointment last week for a blood draw that ended up being bad news. I had suddenly become very breathless, low oxygen saturation, and was coughing really badly for a week or so beforehand and I thought it was just a minor blip. However, the nurses were alarmed at my breathlessness as soon as I arrived and sent me for lung function tests. The news was not good and I am now scheduled for a CT scan, a change in my oxygen prescription, and potentially a change from MMF to intravenous cyclophosphamide. This all came out of nowhere and when I went home and read up in some of the biomedical literature, I realised that my care team are trying to determine if I am having an “AE” – acute exacerbation. What I read about AEs was alarming. I’ve also been reading up on cyclophosphamide and hoping that if I begin taking it that I will stabilise again.
I am sure many of you have gone through this process of feeling as if you are doing very well and then suddenly being hit with bad news. I have not been coping with this very well since I have been doing so well for the last three months. I am struggling emotionally and physically – I can’t even walk 2 metres without having horrendous coughing fits, having my oxygen saturation drop, and gasping for breath.
I don’t know for which ILDs cyclophosphamide is prescribed other than hypersensitivity pneumonitis. Have any of you taken it? Do you have any experiences to share?
Thanks in advance!
May 5, 2021 at 4:22 am #28221Susan HowittParticipant
Sorry to hear you have had a seeming exacerbation, quite scary aren’t they. I am absolutely dreading the pine pollen season as I am allergic and live surrounded by forest of which quite a goodly proportion are pine trees as this is the biggest area for Christmas tree and timber production !!!
I can sit quite comfortably and maintain 90 saturation on 5ltspm but the minute I move I have to be at 13 lts+
Cannot say anything about the medication as I have different lung diseases to you I think.
Hope you can get sorted to be more comfortable moving about.
Take care Sue
May 5, 2021 at 6:24 am #28222
Thank you, Sue – This is the first exacerbation I have had like this so it’s really been a shock. My lung function had been declining, then stabilised and then suddenly, almost over night, my condition completely deteriorated. It’s been really difficult to get my head around the fact that even if they manage to get it to stabilise again, it’s stable at a very debilitating place. After days of complete emotional turmoil, I feel like myself again today, ready to take on whatever the next challenge is. One of the papers I read called this a “cruel disease.” Yep.
- This reply was modified 4 months, 2 weeks ago by Wendy Dirks.
May 5, 2021 at 8:04 am #28226Charlene MarshallKeymaster
Thanks so much for sharing with us, though I am so sad to hear of this experience. A sudden onset of breathlessness, drop in 02, change in PFTs etc are all signs of an AE based on my understanding. In May 2017, I had something similar but I’d been sick for 4-5 days beforehand and things got worse really quickly. I also was put on Cyclophosphamide. I wish I could tell you my experience was better, but it was pretty rough for me. That said, I know a few people who managed to continue working while they took it!
One thing that helped me a lot was something called “magic mouthwash” which helped clear the sores in my mouth from this drug, and I ate a lot of liquids at the time, like smoothies etc. as my appetite was gone. Does this help any? Probably not in a good way 🙁
Do you know if you’ll have to take it for sure, or have they determined if it was an AE? A positive thing is that I was able to re-gain some of the lung function I’d lost. It did take some away permanently but through my recovery and rehab, I did regain some of it. Hang in there – I’m thinking of you!
May 6, 2021 at 4:42 pm #28246
Hi @wendy-dirks, Just checking in. I saw your posts yesterday but was a bit too busy to write a thoughtful response, though I have been thinking of you. Are you feeling any better today? My mom had an AE after having appendicitis and having to stop with OFEV while they treated her ruptured appendix with extreme doses of antibiotics. It was bad news, but the cause was pretty obvious.
I am so sorry to hear that this has come out of nowhere for you. I am happy to hear about Charlene’s experience with that medication though, and that she recovered some lung function after her AE. You can only take it day by day and see how it goes, but it sounds like it’s possible to get your baseline back after this. Keep focusing on what you can control, and check in with us when you need a shoulder. We are here for you <3
May 6, 2021 at 5:10 pm #28250
Hi, Char and Christie – I have not been able to post for two days – I just get an error message. This is a test.
May 6, 2021 at 5:23 pm #28251
Okay, that worked, fingers crossed this will too. Char, thank you so much for sharing your experience and Christie, thank you for your concern. I’m better mentally today and the oxygen nurse is coming tomorrow so fingers crossed I will get a change in prescription.
I have not been formally diagnosed with an AE as I am waiting for a CT scan but my condition deteriorated almost overnight. I thought I was having a reaction to my covid jab but now I realise that it was a coincidence that it happened at the same time.
I feel as if I have to rearrange so many aspects of day to day life every time there’s a change but I guess that’s part of the reality of ILDs. I hope if I go on to cyclophosphamide that I’ll be able to manage the side effects but I read that one should drink several litres of water every day and I know I don’t drink nearly enough right now. I’m also scared of losing my hair. The nurse assured me that none of her patients went bald but my hair is very thin already and my mother and grandmother had very thin hair as they aged and were very self conscious about it. It’s my vanity’s last stand! Please don’t let me lose my hair! I guess I can stand anything as long as I don’t lose my sense of humour and the ability to laugh at myself!
May 8, 2021 at 8:58 am #28264Charlene MarshallKeymaster
Oh good, I’m glad the forums are back letting you post. Sometimes they can be so finicky!
No problem at all re: sharing my experience with cyclophosphamide. If you have any more questions, please don’t hesitate to connect, and I didn’t lose my hair! It thinned a little bit I’d say but I didn’t lose it.
I hope the visit with the 02 nurse was helpful, and glad to hear you feel a bit better mentally as well. Keep that beautiful sense of humor and positive outlook going; it shines through in all your posts 🙂
May 6, 2021 at 6:59 pm #28253Dennis RoweParticipant
I had three exacerbations after being listed for transplant at UCSF. Two times at home, from where my wife called 911 and I was transported by paramedics to the hospital. Both times even though I was on a lot of oxygen, I still couldn’t get adequate O2 saturation. The third one occurred while I was back in the hospital. My Pulmonologist was in contact with UCSF and I was transported by ambulance from Sacramento to UCSF. Three weeks later there was a match and I underwent a bi-lateral lung transplant!
The exacerbations were really scary, and thankfully I had a great care team that started with my wife and Pulmonologists recognizing how serious I had become!
If you’re fortunate enough to be listed. Don’t be afraid of getting a transplant! It’s the only long term cure for IPF!!
Hang in there!!!
May 7, 2021 at 10:17 am #28258Kathy GParticipant
I am going through the same exact thing as you right now. Very, very scary. I have had AE, but never like this. I feel like I fell off a cliff! I am going for a PFT next Tuesday to see the extent of the “damage” My CT scan shows more scarring. I don’t know what happened, but it happened overnight. My pulmonologist mentioned that he may try Rituximab. I don’t know anything about the medication you mention, but I will look it up and mention it to him. I hope you are feeling better today. Stay strong!
- This reply was modified 4 months, 1 week ago by Charlene Marshall. Reason: tagging
May 7, 2021 at 5:32 pm #28261Cindy SearsParticipant
Wendy, I had a hard time after my second covid. I had a cough and lower oxygen levels and fever. I did gain most of it back but took 2 weeks! Praying for recovery for you.
May 7, 2021 at 9:23 pm #28262Kathy GParticipant
I would have never thought of the covid vaccine. For me, I think I got worse after the second shot too. Did your 02 sats decrease too?
August 16, 2021 at 2:15 pm #29557MicheleParticipant
I have read with interest the reports of low oxygen saturation after a covid jab. I had the Johnson & Johnson and for 24 hours afterwards I had low oxygen saturation. I clearly was not alone.
August 17, 2021 at 4:57 pm #29575Karen MartinParticipant
Dennis’s comment about transplant being the only answer resonated with me. I have not had an AE to date, but have recently been diagnosed with not only emphysema and IPF, but also PAH. The idea of transplant has been very scary to me but when I was talking to a friend today, she said, “Not to be crass, but what have you got to lose?” Something to think about. May everyone be so fortunate.
August 19, 2021 at 9:19 pm #29620
@casey Karen, ditto what Dennis said, and your friend does make a great point, haha! Not to minimize the whole transplant experience into a simple “yes/no” discussion. It’s a huge life choice, should you be eligible. I know people who have been listed without really wanting to be, and have struggled to accept the consequences. I also know people who have been thrilled with the prospect of getting a transplant. It’s very personal. My mom’s case was like Dennis’s and when it came down to it, it was like… duh. Of course we are going to give it a go. But that didn’t make it less scary for any of us. It’s ok to be hesitant and scared. That is NORMAL! You have support here as you decide 🙂
August 20, 2021 at 8:41 am #29625Karen MartinParticipant
Christie, thank you for your response. I admit I feel much like a y0-yo with the question of transplant. Until I see what my heart looks like due to the PAH, I won’t know if I can even be considered now, but I think about it. It is good to know these feelings are normal. I really appreciate this group. I have learned so much from reading the posts and am glad to know none of us is alone.
August 20, 2021 at 5:09 pm #29637
Happy to connect with you about this Karen @casey. It’s a very invasive surgery that has lasting implications on your health (good and bad ones) so I would honestly be more concerned if you weren’t having yo-yo feelings about it. It’s a really big decision with a lot of uncertainty. But, as you said, none of us is alone in this journey. 🙂 If you’d like to hear from my mom directly about her experience, I can connect you with her. Let me know.
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